FASD

Being a FASD detective – connecting brain and behaviour

Prue Walker · July 25, 2021 · Updated August 10, 2021

It’s the same every night…when Sophie (10) gets in the shower, I tell her to use shampoo. I ask her if she’s washing her hair and she says yes … then she comes out of the bathroom and her hair is dry. When I confront her, she gets upset and says she’s not lying…. Is this FASD?

If you sometimes feel that you have no idea why your child is behaving a certain way – you are not alone. This week I had talked to Carmel, a kinship carer who was struggling to make sense of Sophie’s behaviour. Carmel felt tired, frustrated and a bit cross – was Sophie trying to push her buttons? Why else would she do this, night after night?

Children with FASD can’t tell us why they behave the way they do – they are not aware that their brain works differently so they can’t explain their impulsivity or their difficulties understanding instructions. Children with FASD need adults to do the detective work around behaviour and figure out the ‘why’.

Being a FASD Detective*

Making the connections between your child’s brain and behaviour takes curiosity, patience and a calm approach. It’s not always something that we can do in the heat of the moment. To understand your child’s unique brain, it can help to look back on their test results or talk to their therapist/s.

Behaviour is communication of something the child/person can not verbalize…and usually the message is some variant of “I am overwhelmed, please help me” Be a BRAIN DETECTIVE! Understand FASD and your child’s brain differences. Step back, OBSERVE, and ask yourself what your kiddo needs!

> Always Remember the Brain:30 Strategies for parents of a child with FASD, Indiana NOFAS

If Carmel interprets Sophie’s behaviour without understanding her brain, she might jump to the conclusion that Sophie is:

lazy – she can’t be bothered washing her hair so she’s lying about it
unmotivated – she doesn’t care about hygiene
avoidant – she won’t do anything if she can get away with it
attention seeking – she wants me to do it for her
deceptive – she just can’t tell the truth
selfish – she only does things she wants to, not what I need her to do.

All these assumptions are based on the idea that Sophie is in control – that’s she making a choice. But what if it’s can’t, not won’t? If we recognise the behaviours as symptoms of a brain-based condition, we can see other possibilities. Sophie might be:

distracted – she really means to wash her hair but once she’s in the shower, she started thinking about something else
forgetful – she meant to do it, but when Carmel called her to get out of the shower, it was too late
struggling to process information – she couldn’t really hear Carmel with the water running, so she just yelled out “yes”
overwhelmed – she really doesn’t like the feeling or smell of shampoo
confabulating – she can’t remember whether she washed her hair or not, but once Carmel asked, she said yes, and now that feels like a real memory.
sensitive – she knows she’s done something wrong but isn’t sure what, and now she’s in trouble, so she feels defensive.

I asked Carmel if she could think of a time when Sophie behaved differently – were there days when she can remember all the steps, and follow them?

Carmel said no, that this happens all the time.

I asked whether Sophie would behave differently if Carmel told her they would be doing a fun activity after her shower. Would this motivate her?

Carmel felt that it would make no difference, and that Sophie would be more likely to rush her shower and miss other steps too, like forgetting to use soap.

Just by taking time to reflect, Carmel was able to notice that Sophie had never independently remembered all the steps involved in showering, even when there was an incentive. Even though she felt Sophie should know better, she realised that the behaviour wasn’t within Sophie’s control.

We reviewed what Carmel already knew about Sophie’s brain and how it might be affecting her behaviour. Carmel knew from past assessments that Sophie has difficulties with:

attention – she loses focus easily and gets distracted
memory – she doesn’t always retain information
verbal processing – she can’t always understand verbal instructions
sensory processing – she doesn’t like strong scents
planning and organisation – remembering steps in order.

Carmel realised that Sophie needed more help to keep focused on the steps involved in the task, and needed reminders. She was aware that Sophie processes visual information better than verbal information so it made sense to use a visual chart. Carmel also agreed that Sophie needed Carmel to check she had done all the steps before getting out of the shower.

Carmel said that Sophie didn’t need reminders to turn the tap on or off, or to dry herself, so we came up with a picture chart with just the steps she needed help with. Because Sophie can be a concrete thinker, Carmel agreed it would be better to use take photos – that way Sophie wouldn’t confuse the shampoo and the lotion.

By making the connection between brain function and behaviour, Carmel felt more accepting of Sophie’s behaviour and was able to come up with a new strategy. She could also see that Sophie would need help to use the chart which we broke down into:

teach
remind
supervise.

Carmel put the chart up in the shower and we worked out the next steps:

Carmel would show Sophie the chart and explain it.
When it was time for Sophie’s shower, Carmel would indicate the chart and remind her of the steps.

When it was time for Sophie to get out of the shower, Carmel would check if she had done the steps – if not, she would wait while Sophie did them.

The final step for Carmel will be to watch and see if it works. If the visual schedule doesn’t work, Carmel might need to use her detective skills to work out why. Sophie might need more teaching, more reminding or more supervision.

*The idea of a FASD detective isn’t original – if you search online you will find other examples of this concept as a helpful approach for parents and carers.

Prue Walker is a social worker and FASD consultant who has been working with and advocating for those with FASD since 2008. She provides FASD education, coaching and consulting services to families and organisations. Contact Prue to discuss your needs.

Contact

+61 419 878 260
Email Prue

We acknowledge the Traditional Owners of the country on which we work, the Wurundjeri people of the Kulin Nations, and we pay respect to their Elders past, present and emerging. We recognise that sovereignty was never ceded.

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Parenting and FASD: 3 steps that can make a difference

Prue Walker · July 14, 2021 · Updated August 21, 2021

If your child has received a diagnosis of FASD, you are probably thinking – what next? What do I do? What is going to make a difference?

When a child has difficulties understanding instructions, following routines, and managing their feelings, you are probably seeing meltdowns, aggression or oppositional behaviour – which can make family life hard. Therapies can be helpful, but what can you do as a parent?

Here are 3 steps you can take to help you parent your child, and hopefully make life a bit easier and more fun.

> 1. Learn about the brain and behaviour

> 2. Follow some simple guidelines

> 3. Assemble your parenting toolkit

1. Learn about the brain and behaviour

When a child has a physical disability, we make accommodations. We don’t expect a student who uses a wheelchair to be able to get up steps to their school – they need a ramp. No-one expects the child to change.

When a child has FASD, the first thing we usually notice are behaviours. Common indicators of FASD include:

Repeats mistakes
Difficulty controlling emotions
Easily distracted
Can’t see another person’s point of view
Doesn’t follow instructions
Can’t sit still
Has trouble playing with others
Behaves younger than their actual age.

Most people would look at this checklist and think – well, the child needs to learn these skills. How can they function at school, at home or in life if they can’t follow instructions? And you’re right, this is what makes life so hard for children with FASD. When we expect children to learn these skills – and despite our best efforts, they don’t – parents can be left with a sense of frustration, and the child, a sense of failure.

When we focus on changing behaviour, we are making assumptions about what the child can or can’t control. But FASD is a disability, and its effects are lifelong. So why are we expecting the child to change?

Is it that they won’t or that they can’t?

If these words are familiar, then you have probably come across the work of Diane Malbin, even if you didn’t know it at the time. Her book Trying Differently Rather Than Harder explains FASD as a “brain-based physical condition with behavioural symptoms”. Understanding the connection between brain and behaviour is the key to supporting children with FASD.

Diane Malbin uses the example of a boy who leaves his bike outside in the rain, instead of putting it away. As a consequence, he’s sent to his room for time out with the expectation that he will learn from the experience and not repeat his mistake. This strategy assumes that he can remember what happened, understand why he is getting a consequence, and next time he’s riding his bike he will act differently. But the boy’s brain can’t do all these tasks, so he is likely to repeat the mistake. The parent gets frustrated.

If the boy’s parent can understand that he can’t remember to put his bike away, they can come at the problem from another angle. They might focus on finding ways to remind him without punishing him for a mistake he couldn’t help.

Diane Malbin calls this the neuro-behavioural or “NB” approach.

This book is recommended reading for any parent who is starting to learn about FASD, and you will find the NB approach mentioned in many other FASD resources.

2. Follow some simple guidelines

The second step is to learn some simple principles that help children and young people with FASD manage daily life. Eight Magic Keys by Deb Evenson and Jan Lutke were developed to help students, but have been used by parents and carers to understand why their child might be challenged, and how these challenges can be reduced or prevented.

1. Concrete – use concrete words, avoiding abstract ideas or figures of speech.

Instead of “get dressed” say “put your pants on”.

2. Consistency – keep things the same as much as possible in different environments, and reduce changes.

Use the same words for things at home and school.

3. Repetition – you will need to repeat ideas and information many times before they enter long term memory.

Repeat instructions using the same words each time, every day.

4. Routine – keeping things the same helps children know what to expect and reduces anxiety.

Keep meal times the same every day, even on holidays and weekends.

5. Simplicity – reduce stimulation and overload from too much information.

Use short sentences, give one instruction at a time, and wait for the child to process.

6. Specific – say exactly what you mean and describe each steps involved.

Instead of “tidy your room” say “put all the toys in this box”.

7. Structure – this helps the world make sense for children with FASD.

Have a place at home for shoes, for schoolbags, for readers. Use picture labels, and put things in the same place every day.

8. Supervision – children need supervision as for a younger child, to help them learn appropriate behaviour.

Be close by when your child is playing with a friend so you can teach and model social skills.

The Eight Magic Keys also help us understand why unwanted behaviour might be happening – was there a change in routine? Was the task too hard? Were there too many instructions? Did the child need more supervision? This kind of tool helps you take a step back from blame or shame to apply a ‘scientific’ lens and consider your options for what you do next.

If you search online for “Eight Magic Keys” you’ll see these ideas presented in a range of videos articles and graphics.

3. Assemble your parenting toolbox

The third step involves looking for practical FASD strategies and tools that you can try at home, to see if they make a difference to your child. One size won’t fit all, so it’s worth putting together a tool box to draw from.

NOFASD Australia has collected helpful strategies that have been tried and tested by parents and therapists in Fetal Alcohol Spectrum Disorder: An Australian toolkit for parents, caregivers and families. These include:

ideas to manage shopping, restaurants, and outings
suggestions for daily routines – bathing, mealtimes
calming strategies
ways to help your child express emotions.

Here’s an example of a visual schedule to support a child.

Visual schedules are great for children who have trouble remembering routines, have anxiety about what comes next, or have trouble with verbal language and processing. Many children with FASD process information better when it’s visual – if you have a therapist involved, they can help with these strategies.

If you feel overwhelmed, choose one or two things to try, and don’t feel you have to make too many changes to your daily routine at one time. What is causing the most stress at the moment? You might want to start with the morning routine, or the weekly shopping trip. Your child will have individual strengths and challenges, so not all strategies will be a perfect fit. You could print off a few pages of the Toolkit that cover the morning routine and circle the things that are worth a try, and cross out the ones that won’t.

It’s important that the strategies you use are a good fit for your child, and are presented in a way you relate to, and that are going to fit into daily life. Some parents enjoy reading about ideas in depth, others like checklists and tip sheets, while you may learn best from real life examples. If you can’t find exactly what you need, try typing a question into google, for example:

how can I help my 10 year old with FASD make friends
strategies to help teenagers with FASD manage money

Or just use some keywords – eg FASD tips parents ownership/lying/anger etc.

In my blog FASD essentials I talked about key Australian FASD sites, including NOFASD and the FASD Hub. Take some time to explore these websites – you’ll find lots of helpful information.

Some of the best insights come from therapists who have also parented children with FASD – they know first-hand what doesn’t work, and also bring a professional lens.

Dr Vanessa Spiller is an Australian clinical psychologist and also the parent of a young person with FASD. You can watch her talk about her experience on the FASD Hub. She has developed a suite of FASD educational resources “Explained by Brain” including workbooks, videos and training for parents, carers and professionals.

Eileen Devine is a Canadian clinical social worker and FASD specialist who is the adoptive mother of a child with FASD. She coaches families in the neurobehavioural approach, and blogs about parenting and FASD.

Ideally, your child’s therapists will be able to help you find and use effective parenting strategies. But we know that many typical parenting strategies don’t work for children with FASD – so if your child’s psychologist, speech therapist or OT hasn’t had the opportunity to learn about FASD, you may need to refer them to these FASD resources. Once professionals can understand FASD, they can be more a more effective support – and help you make a difference to your child.

Contact

+61 419 878 260
Email Prue

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Essential FASD resources

Prue Walker · July 7, 2020 · Updated August 11, 2021

If you are looking for good quality information about fetal alcohol spectrum disorder, it can be hard to know where to start. When I first started learning about FASD in 2006, there was very little information available in Australia – nearly all the resources I found were from the US or Canada. Fortunately that’s changed, and we now have some great Australian sites and resources to help parents, families and professionals learn more about FASD and most importantly, what works.

> Australian FASD information

> FASD resources for parents and carers

> FASD resources for educators

Australian FASD information

The FASD Hub is the place to start.

What is it?

An online hub for all things FASD in Australia, including diagnosis, facts about alcohol and pregnancy, and a directory of services around Australia.

Highlights

To hear the voices of children, young people and families affected by fetal alcohol spectrum disorder, navigate to the videos to hear about some of the challenges and successes of these families.

Sleep is a huge problem for kids and young people with FASD and can really affect family life. Have a look at this fact sheet on sleep problems, for advice.

FASD resources for parents and carers

For parents and carers, you can’t go past NOFASD Australia for reliable information, and most importantly, help.

What is it?

NOFASD supports individuals and families living with FASD and brings their voices to government, researchers and policy makers. Sue Miers founded a volunteer organisation over 20 years ago, when she couldn’t find support for her family. The organisation now provides a carer helpline, training, and lots of resources along with webinars and podcasts.

Start with the Resources to see what’s available. The FASD Toolkit for Australian Parents, Caregivers and Families* for families and caregivers pulls a lot of FASD info into one place, and includes strategies that may help with daily life – shopping, bedtime, routines. You can also complete the free online course, Foundations in FASD.

If you are dealing with the NDIS, have a look at the NDIS fact sheets and download a sample plan for a young person with FASD.

Highlights

Home schooling due to COVID-19 has been a huge stress for families. Kids with FASD have missed out on important schooling, parents haven’t had a break, and there is no sign that lockdowns are a thing of the past. NOFASD has worked with parents to produce a series of webinars to help you support your child in home learning, while not forgetting your own self-care.

Adults with FASD (and anyone who wants to understand them) should read CJ Lutke’s blog. CJ lives with FASD and has used her experience to become a well known speaker and presenter. In her post Going for Coffee she shows how the sensory challenges of FASD make this ‘simple’ task into an obstacle course.

FASD Resources for Educators

As more children are being diagnosed with FASD in Australia, teachers and preschool educators are keen for information to help in the classroom. The good news is that new resources for Australian schools are currently being developed under the National FASD Action Plan. In the meantime, here are a few Australian resources (and one from Canada).

The South Australian Department of Education has some guidance for supporting students with FASD – the information on the site is introductory, but it’s a good start.

Schools may be interested in the FASD training modules developed by the Department of Education in WA These explore how learning is affected by FASD and are designed to be delivered within a school team.

This podcast features Australian FASD experts discussing how the classroom can be adjusted for students with FASD.

Recommended:

If you are looking for more detailed information, I recommend two Canadian resources – What Educators Need to know about FASD and What Early Childhood Educators Need to know about FASD. These provide a wealth of evidence-based strategies for the kinder and classroom to help teachers understand the needs of students with FASD and provide accommodations.

I hope these help you start on your journey of learning about FASD. Once you start exploring the resources available, you’ll find many others. I’d love to hear about your favourites. I’ll be featuring other resources in future blogs.

*full disclosure – I revised the Parent/Carer Toolkit for NOFASD in 2021 so I think it contains some good info! Full credit to the many resources used to compile the toolkit – any mistakes or errors are mine alone.

Contact

+61 419 878 260
Email Prue